FIONA AND SCOTT’S STORY // an £11 test could have saved our baby’s life

Two years ago Fiona Paddon and her husband Scott Bramley were excitedly awaiting the birth of their first child, but their lives were turned upside down when their newborn baby was inadvertently infected with group B Strep.

As told to Jacqui Paterson, Mummy’s Little Monkey

Scott and I were just weeks back from a holiday in the Maldives when we discovered I was pregnant.

It was a happy surprise – although we’d been talking about starting a family for a while – and we promptly nicknamed my bump ‘Gili’ after the stunning tropical resort where we’d been staying.

For the first few months I battled the queasiness and exhaustion of morning sickness, but then the 12-week scan came back fine and the threat of miscarriage receded, and it all began to seem real. I didn’t breeze through pregnancy, but I knew in a few months I’d have my baby in my arms, and that all the discomfort would be worth it.

I was two weeks overdue when my waters broke.

Unfortunately my labour failed to progress, so after about 33 hours – first at home, then in the birth centre – I was admitted to hospital to be induced with a hormone drip.

HOLD ON, GILI

Unfortunately, before this could happen there were more complications. Gili’s blood pressure began to drop and – I found out later – I had a placental abruption (when the placenta starts to come away from the wall of the womb). I was rushed into surgery for an emergency caesarean section.

It was all happening so quickly that my mind struggled to keep up with what was going on. I was being pushed along the corridor in my hospital bed, while Scott ran alongside me pulling on his scrubs.

‘Hold on Gili, hold on,’ I remember thinking.

There was no time to administer an epidural, so I had to have general anaesthetic. My baby was delivered at 12.35pm, and I woke up in recovery an hour later. ‘Baby?’ I whispered to the nurse, but instead of answering she went to get Scott.

‘It’s a boy,’ he started, ‘but he’s really ill; the doctors think he has brain damage.’

I couldn’t take in the enormity of his words – just a few days ago we’d been excitedly looking forward to meeting our healthy baby and now he was here, but fighting for his life. How could this be real?

I was still too ill to be moved or even visit my son; being away from him was torturous.

Then, when the doctors announced they were moving him to a specialist neonatal unit 30 minutes away, Scott faced a terrible dilemma; did he travel with his son, or stay with me until my transfer to the same hospital had been finalised? These just weren’t the decisions we imagined making as new parents.

Eventually, medical staff advised Scott to stay with me.

HE WAS PINK AND CHUBBY AND PERFECT

The first time I saw my baby was when they briefly brought his incubator to my bedside. I could barely see him amongst all the tubes and wires, before he was wheeled away to the ambulance.

Still, none of it seemed real.

An hour later Scott and I also arrived at the new hospital, and I was wheeled into the ward. I still wasn’t able to sit up or move, so couldn’t see anyone, but could clearly hear the other women with their babies.

For the first time it truly hit me that mine wasn’t with me, and I began to sob. ‘I’m so sorry,’ the midwife apologised, ‘there’s nowhere else to put you.’

Edward had been admitted to the neonatal intensive care unit on a different floor, so while I was bedridden Scott would shuttle between the two of us, bringing me photos. If you looked past the monitors attached to his tiny body and the ventilator helping him breathe, he was pink and chubby and perfect.

And it made made me so angry.

I’d done my job – I’d carried my son for 42 weeks, loving and protecting him as he grew, taking all the right vitamins and avoiding all the wrong foods. My pregnancy had been straightforward and every scan had been perfect; even the birth complications I’d experienced – although traumatic – were ones modern doctors were trained to deal with.

So why, how, was this happening?

MY JOY

It was four long days before I was able to hold my son for the first time. It was only then that I saw he had lots of thick dark hair, just like Scott’s; hiding under the hat holding his breathing tube in place.

It then that we finally decided to call him Edward Gili. When we discovered soon after that Gili also meant ‘my joy’ in Hebrew, it just seemed so perfect.

The paediatric doctors had fitted him with special cooling jacket that would lower his body temperature and prevent further brain damage.

Scott and I would sing him Twinkle Twinkle Little Star. ‘Come on, Edward,’ I whispered, willing him to get better. ‘You must try to breathe on your own.’

Sometimes he’d open his eyes, and my breath would catch in my chest; it was the most beautiful thing I had ever seen.

We pinned all our hopes on a miraculous recovery, but were devastated when an MRI scan revealed he had the most severe level of brain damage.

‘Are you sure?’ I begged the doctors. ‘Shouldn’t we wait a bit longer?’

I couldn’t bear to give up on him, but they told us they couldn’t be sure he wasn’t feeling discomfort from the breathing tube. Scott and I knew the kindest gift we could could give our child was to let him go as peacefully as possible.

SAYING GOODBYE

Our family members had already come to see Edward, so we made the decision to say goodbye on our own. Scott and I didn’t know if we’d have minutes, hours or days with him once the breathing tube was removed, and it was just too difficult to share those precious last moments.

The staff led us to a private room, where we took turns holding him. I dreaded the moment the breathing tube was removed, but as I passed Edward to Scott it became dislodged. In a way I was glad the decision had been made for us – I don’t know if I’d ever have been able to make that call – but I was also thrown into a panic about what would happen next.

As it turned out Edward was able to breathe on his own for a short while, and we had 12 wonderful hours with him. We held him, and played him music, and gave him his first bath – all those tiny moments parents take for granted. Then, peacefully and quietly, he slipped away. He was 10 days old.

When I look back, I’m so grateful for that chance to be a mother to my son. I only wish I’d thought to take him outside. He had lived his entire short life inside hospital walls, I’d have loved to take him into the courtyard so he could feel the fresh air on his face.

WHY HAD THIS HAPPENED?

The next day I was discharged. As Scott and I stood at the front door of our London home, it suddenly hit me that we were coming home without our baby. Scott’s mum and sister had prepared the house for our return: as I stood there, arms empty and house stripped of the baby furniture we’d excitedly bought, it all seemed so unreal. Did I ever even have a child? My distraught mind wondered.

For the next few weeks I didn’t leave the house; I knew people meant well, but couldn’t bear to see the sympathetic looks on their faces. But I made sure I was never on my own either – I didn’t want to be alone with my own thoughts.

Two weeks after Edward died we met back at the hospital to speak with the consultant obstetrician. By now some of our shock had given way to questions. Why had this happened?

I don’t remember exactly when I first heard the term ‘group B Strep’. I know it was mentioned in hospital, and that doctors believed GBS to be the cause of the infection, but we were so preoccupied with Edward we didn’t really have time to process what that meant.

But now, as we listened to the obstetrician, we began to truly understand. She told us group B Strep was a normal bacterium unknowingly carried by 25 percent of women. Though harmless to the mother, it could be passed to newborn babies during childbirth. Most babies simply became carriers (like Mum) but a percentage actually became infected by the bacterium, which could then cause devastating complications, including blood poisoning, pneumonia and meningitis.

We’ve since discovered that one in 10 babies who contract group B Strep at birth die from the infection – that’s an average of one every week in the UK*. And every two weeks a baby survives, but is left with long-term physical and mental disabilities, such as cerebral palsy, deafness, blindness and serious learning difficulties.

She went on to explain there was a test that could have alerted doctors to the fact that I carried the bacterium. This would have prompted them to administer antibiotics as soon as my labour began – especially as my waters had broken a long time before Edward was born, which increases the risk. This would have greatly reduced the chance of Edward contracting the infection, or the severity of his illness if he did.

But – unlike other countries around the world – UK mothers weren’t routinely tested for group B Strep because the NHS didn’t have a national screening programme to carry out the £11 test**. Perhaps more shockingly, nor were expectant parents informed about the risk and given the option to pay privately for a £35 test.

That was the first moment I realised Edward’s death could have been prevented. If Scott and I had been told about the risks, we could have chosen to get tested, but we had never even heard of group B Strep before it took our son’s life. The realisation devastated us all over again.

REMEMBERING EDWARD

In the summer of 2014, surrounded by family and friends, we farewelled our precious son, Edward Gili Peter Paddon-Bramley. It was important to me that his short life was recognised and celebrated. We wrote messages on rubber ducks and set them adrift down the River Thames.

Two years on, I’m sad to say nothing dramatic has changed since Edward’s death.

I can’t bear the thought that he died for nothing, so I’m fighting alongside the GROUP B STREP SUPPORT group to raise awareness of this little-known killer. The fact I could help prevent this happening to another family drives me forward and helps me with my grief.

I won’t give up until the UK has a screening process in place, or expectant parents are educated about group B Strep, and can make an informed choice about getting tested.

Will you help me?

July is group B Strep Awareness Month. You can help by signing Fiona’s PETITION, and by sharing her story. You can also support her as she FUNDRAISES for group B Strep awareness with a 1500 metre swim along the River Thames. For more information about group B Strep visit the SUPPORT GROUP or the NHS WEBSITE.

* figures obtained from the group B Strep Support group: http://gbss.org.uk/; ** figures obtained from the group B Strep Support group: http://gbss.org.uk/

8 Comments

So heartbreaking…. It must be hard for you all. I have two kids and I don’t remember it being mentioned to me before when I was still pregnant. I strongly believe that all pregnant should be tested for it. Edward is such a cute little angel. I’ve signed the petition. #brillblogpostsCheryl @ ReimerandRuby recently posted…Day 1: Dunnottar Castle – Our Scottish Highlands Adventure

This post is unbelievably sad, I am so very sorry. Edward was a gorgeous baby and it made me cry just looking at how perfect he was as you held him. Until I read this I had no idea about B strep in babies or that you could get a test for it. You are incredibly brave for writing what must be such a painful blog.#brillblogposts Abby at http://www.peppermintcove.com

🙁 Im really really sorry 🙁 I was crying while I was reading it. I asked my midwife for Strep B test but she said they doing that only if someone has bad infection. I decided to do that private I didn’t want to risk my baby life

I’m so so sorry Edward was a lovely cute little baby who didn’t deserve to only live a short time, reading this story has made me cry I have a 4 year old daughter of my own and I was not told about strep B too I really do hope we can change this I’ve also sign your petition.

It’s totally heartbreaking and I am so sorry for Fiona’s loss and all the parents who have needlessly lost their children to GBS I had undiagnosed GBS and was not given antibiotics until after delivery when my baby was taken to special care. I was in labour for over 18 hours and baby failed to progress. I also had presumed sepsis and started a fever. After initial grunting from my baby and a tense weekend awaiting test results he was, unbelievably, clear from the infection, and for this I am blessed, but it could have had the most catastrophic results. So many parents have not been so lucky and that should not be the case in a first world country with modern medicine. It makes me so angry. Whilst in the hospital bed alone following an emergency c section, I was thrusted a leaflet on GBS without explanation. Why didn’t the midwives know about it, if it was so common, I wondered afterwards? Greater education and greater awareness is needed in addition to the test being routinely made available. Keep fighting Fiona. We are all with you and you are doing a wonderful thing x

It’s crazy that this is STILL happening to women in this day and age – and from something that is entirely preventable and/or treatable. I’m so pleased to hear that, in your case, your baby was safe and well. Your support and well wishes are so gratefully received, and I will make sure your comment is forwarded to Fiona and Scott. Jacqui x